Trying to be Positive – in the Brave New World (by sarah)

Its a weird time out there at the moment and as I think I mentioned before I have found it hard working on The Punk Universe in recent years as the point at which our actual timeline and the fictional timeline were supposed to diverge into a slow multi origin apocalypse/societal collapse was Britian leaving the EU and a despotic badbusiness man getting in as the Predient of the USA... The story line contains plagues and forced isolations, climate change dissastors and nuclear war... so though I am still writing it I am not sharing it in the way I used to and the rate of writing on this project has decreased drastically.

Also a lot more of my real world work is based around community groups and things now and though I had toxic positivity that gas lights you telling you nothing is wrong and to keep smiling, I have started trying to make my corner of the world positive but without the denial - yes things are mad, bad and I am so very sad about the evils that are arising and try as I might there isn't anything I can do about the big picture, but big changes can happen with small changes and to badly not quiet quote one of my favourite fixtional characters Granny Weather Wax from the Terry Pratchett Discworld series -

I will do as much as I can where I can with what I can

One of the big things of late has been how divided and dipolled everyone is - poeple don't just dsagree anymore they almost instantly start calling each other names meaning no real discussion is ever had - this is bad. On top of that I feel that the internet is dead - or at least social media is - it didn't quiet happen in the way I predicted and is still on going (I wrote a horror story on it so we kind of don't want my exact prediction). So where does that leave me? Twitter used to be my main plateform, it was full of academics and authors who because I was there at the beginning actually talked to me - gave me advice and sometimes pep talks. I mean I also suffered from on line stalkers right from the get go with the 2008 incident involving police and what not marking a retreat from fame for me. But not it is kind of ubiquitous hate and scorn that sloshes around - how do you counteract that? And where do I find my new twitter?

I am on Bluesky, Mastadon and Threads as my relatively new ones. Threads is a depressing cesspool that just mimics Facebook and that isn't surprising as it is connected to Facebook and Instagram so most of my posts are just from my Insta account. And I love Instagram but it is a forced positive environment and that is kind of okk because I know that is what it is and I mainly use it to share images of cute things anyway. I was trying to counteract arguments that are demostratly false and though very occassionally this works and someones mind is changed or rather they were actually looking if info to make up their mind - the number of times this happens has dropped drastically this year with the last few months being even worse.

I have also always tried to prevent myself ending up with just an echo chamber as I felt that was dangerous and not helpful for a communicator now however I find myself seeking out curated spaces and have specifically joined a mastadon server that is about creativity and moral support. I have been fallowing groups that like Pawsitive News and find myself looking back across the years away from the social media I so loved and I did love it - it got me through times of being bed bound and gave me a voice when I most needed it - it is also the reason I ended up working at music festivals and got my art displayed at pestigous events globally and got to be part of charity anthologies organised by or next to famous authors I idolised - both of whom have crumbled to either bigotory or scandal since.

So what do I see as I look back across the years? I yearn for discussion forums on specific topics and find myself once more joining and setting up mailing lists for people. What I would love is for the blogosphere to come back but I know it can't ever be like it was in the early naughtes for blogs. But none the less I have kind of kept going with various blogs on and off and I am happy I have done so and occassionaly back blog stuff I wrote on facebook etc...

Bluesky - I forgot Bluesky... and yeah basically I forget Bluesky alot. I don't actually do well tryig to use all this stuff on my phone but no ones websites actually work properlly anymore but I am so sick of having an app for everything... And then there was finding out that the photo editing software I was paying for and using was actually training generalised AIs and being a security leak on my phone... ah yes the AI...

I feel that I may have written too much on the internet and maybe put too much art up as I am now loosing jobs and oppurtinities as people think myself is AI - AI is this instance being specific generational AI that steals art and writing and not the various decades long art projects or medical and educational uses such as read to speach. Did I train the damn things with my spewings? Or I am multiple - we the dyslexics ADHDers who use dashes instead of the appropriate grammer and write reams - yes we are legion and we used to be able to find each other on the internet and not feel so alone but know there are just ghosts.

But... I also love making zines, mainly little hand drawn booklets and you know they exist outside of the internet for the main part and they are made at groups with actual people and yes mainly you have to physcally be able to get there but the neural divergent community are finding ways to stick together digitally too including video calls when someone can not attend a group. The hybrid situation that use disabled people had dreamed off and been told no its too difficult and then...the pandemic came and we were like AT LAST... and then the world kind oftook it away again even though some people were still stuck at home more disabled than ever after brushes with covid induced death and complications.

I wont live the post covid world is full of tech stuff that keeps bamboozling me - I can't even pay for stuff anymore... and nothing is simple - an app for every restuarant - which you know for accessability could be great - social anxiety or speech issues means no problem you can still order independently but only if it is coupled with the option to order by just talking to staff if needed.

Again how do I make this postive? It all sounds depressing right?

Well I have been doing little bits of consultation and running workshops at conferences and so on that specifically look at these elements - mainly in the education and heritage sector but in culture in general including music venues.

Be the Change You Want To See

Arg!!! if I am not careful I will end up making inspirational posters with kittens on.

Anyway I think the upswing of the AI and social media decline - remember the horrible dipoled arguments? Well a lot of that isn't real people it is bots andthis has been a growing ssue for like a decade but ithas accelleranted recently. And it doesn't matter that they aren't real because the affect on our brains when we read it is real and detrimental 🙁 Also it empowers people to spout hate.... the upshot of all of this is that people are moving back towards physical makaing and creating or digital for small commuities - actual networks of people via things like Discord (obviously many still feed the internet at large but again worrying only about the little bit ofthe system you can actually affect).

I am not abandoning the internet but I am trying to be mainly helpful providing information that can help ie where my local warm spaces are and community fridges and sharing writing and art prompts. Obviously I mainly write horror and that isn't going anywhere I am just sharing the more positive and yes cutsie bits because I feel they are a kind of barrier that is needed at the moment and you know the nice and cute is a huge part of who I am as well - for years it was the part everyone expected so the horror and hard scifi were always a bit of a shock! But I think this coupled with the political commentary have kind of hidden this part of me and it would be easy to become and stay bitter about everything.

so the cute is back

I will share the cute and the other stuff will be there but with warnings so people can choose wheather they feel strong enough or want to enter that world. And I will continue to run real world groups and events as Science and Art is for everyone.

Also things that could be seen as negatives or at the very least contradictions actually mean I am in a unique place to build bridges and expain access needs etc... With the current revolation about being deaf my whole life...

I am:

A disabled sports instructor A dyslexic writer A blind visual artist A deaf musician

I have awards for all of these things that were recieved without the disability being taken into account or even at the time known about even by myself!

It is exhuasting but also kind of awesome and now it is time to make the world a better place one little...

act of kindness

at a time...

Back to granny WeatherWax -

Kind aint the same as nice

InkWell (by sarah)

This year thanks to the sponsorship of the Gloucestershire Poetry Society I am running a monthly workshop called InkWell at The Folk of Gloucester. The sponsorship pays for room hire allowing me to offer the 2 hr sessions at an affordable rate (or more affordable than they would have been without it). £10 fall price and £5 concession and I am happy to include low wage, benifits, retired, college student, blue badge holders, blue light discount and so on.

The workshops are 1-3 pm on the first Thursday of every month except January - they will cover subjects such as scrapbooking, visual poetry, journalling, dairy keeping, creative writing, zines, chapbooks, junk journals, ugly sketchbooks, illustration, zentangles, card making, ink work and so on.

There will be a theme for each month starting with Sakura or Cherry Blossom for the first session Feb 6th 2025. We will cover making your own blossom themed note books using binding combs or fabric and ribbons. There will be themed paper, tape and stickers plus other little accessories. There will also be writing inspiration and room for people to work on their own projects using the resources I provide.

The name is a triple word play as The Folk is a 500 yr old timber frame building or rather buildings built in the Tudor era and like a lot of older buildings it has its own well which since the renovations is now viewable.

(backblogged from social media posts to keep a record of InkWell)

Burns Night Poetry and Songs to be! (by sarah)

Tomorrow The Folk of Gloucester (a lovely Tudor timber framed building) will be hosting a Burns Night which is very exciting especially as we are going to have Scottish folk tunes from Jessica Law that we can all join in with! And poetry recitals by me! There will also be haggis of various ilks!

I really enjoyed their last Burns Night two years ago so am very excited!

tix are here (its £10)

Here are some photos from the 2023 celebration:

Tyroids and Singing (by sarah)

Back when covid hit I lost my voice - it was a whisper for about 18 months and the sore throat was horrendous. Of course we knew why this was as I was hospitalised with chest pains a few months after appearing to recover - my thyroid was inflamed, I did in fact have Grave's Disease or hyperthyroidism - it was over active and it had gone there from being slightly under active and the damage thyroids do isn't so much how high or low they are but the rapidity of that change - my eyes ached all the time but I was on medication relatively quickly and there was a lot of other stuff with mum etc going on. There wasn't really time to process it all.

Things improved and my voice came back and it wasn't quiet right, I always feel I have a lump in my throat and I find doing some of the sounds I used to hard... mainly I get coughing fits, and often I have a mild sore throat. Like my soft weirdly wide nails with ridges on them - they are kind of normal shape again - kind of but the ridgedness and softness remain - this is all just part of the corse with Grave's disease but the sore throat wasn't too bad and my voice was basically back so I started singing again - first at the monthly Folk Music Jam sessions, just whispers with the general melee, then I joined a Folk Choir that is lets you sing the part you want rather than being split into sopranos, altos etc... and then I joined a group called The Cryptid's and even wrote songs to make the general public sing!

I've got two project exploring voice coming up and I also got to be the Fairy Cryer and do announcements in my loud announcing voice including support from the actual Town Cryer - I even have my own bell for the role. And then a few weeks ago it happened...

The sensation of being strangled, the weird loud swallowing noise, wheezing and whistling when breathing which both kids hate and if I touch my neck I have like a flesh collar under the skin. The cough is worse, the sore throat worse - ear ache and my levels of tinnitus have shot up... and my voice is wavering, changing pitch and cracking randomly. And I have been blaming everything rather than facing the fact it's the thyroid again. I had been back under the GP's care for endocrine issues and I don't really want to trek back to the hospital but it is what it is. I have been mainly avoiding the Gloucester hospital since mum died and have been doing relatively well with that - I don't want to go to the hospital.

Its weird though because my main thing is that I really want to sing and that is the thing I have latched onto - if I have to have the thyroid removed what happens to my voice?

Eve and May (by sarah)

It is May, the beginning of May, the beginning of Summer - for some the new year begins now, what ever it is a time of new beginnings... except it is also when Mum was dying, it was an end, a birth to the after life maybe... a something and definitely a transition.

Tomorrow it will have been two yrs, we are only just sorting out her room... only just removing the broken stair lift (it couldn't be fixed metal had sheared off of it), only just paying off some of the stuff that needed paying off. We have only managed any of this with help - we found the roof had been leaking and teenagers swarmed the house and like a little chain of ants took ruined carpet and matrices to a small skip we had out the front. We made them sushi and they stayed to play video games and craft things afterwards - I cried because the teddy bear calendar had been moved - it was still in the configuration my dad had set it too. It had to be moved.

The house moves forward, into a new era, it is once more a big house - Jean has wondered off to University... there are no small children... it is strangly empty and yet not as we have a house full of stray animals... but it is different. Mary likes being able to use the computer more - the entertainment centre is back in the living room and we watch films and play games.

My health has not recovered from miscarriage, covid or looking after mum... but it has gotten better just not as much as I would have liked. And if I was angry about womb stuff before hand I am livid now... we had to go private to get teenage periods that were heavy enough to cause passing out looked at treated in any sort of reasonable time frame... and mum... mum who made sure I knew about periods before I had them because she hadn't and had thought she was dying when her's started... was still too embrassed to tell me she was having some problems in her 70's because everything about wombs and sex and often boobs... problems conceiving, loosing pregnancies, still births, abortion, periods, STDs, AIDS, problems both physical and mental after having a baby and even not wanting babies or sex... all of it is taboo still - all of it is not talked about.

And well I confronted her about blood... she had stage 4 womb cancer... with everything else that was happening it was a drop in the ocean of medical chaos at the time but involved us having to make "interesting" medical decisions, she had already had two different types of breast cancer (no really) which she had beat with operations, radiotherapy and the lighter end of chemo. They told us that it would only be pallative for the cancer but that it was initially advancing quiet slow - the treatments for it in the state she was in would likely have killed her but she was still scheduled to go on the lighter side of chemo etc... as she fought off infections it became aggressive and very quickly spreading. It still wasn't what killed her.

There was genetic testing and a want to stop this kind of thing happening in future - for womb and reproductive system health to stop being shunted to the side. I am sharing all of this with my mum's permission including that though she would never sign a Do Not Resuscitate or ask for no treatment whilst there was hope... she did decided to only take palliative care and go for quality of life over more invasive cancer treatments. I know some people felt this was me allowing mum to kill herself but it really wasn't and all the decisions where talked over endlessly with her and medical professionals. It was also not her only active cancer - she had a slow growing tumour on the adrenal gland.

But all that aside the womb cancer could have been found sooner... and this is the case for many and we don't talk about it... lives are lost needlessly because we won't talk. Before covid I had a set of workshops I had created specifically to try and break these barriers down - the conversations can save lives. Even nurses attending the workshops told me they had suffered and talked about stuff with colleagues or gone to the drs. Stephen Kings mother died because this very thing and that is before we even look at how birth control has been used untested and has its origins in eugenics, or how pain is dismissed as hysteria or aesthetics denied because you managed a vaginal birth so you'll be fine with pain...

This was why I started The Glass Pelvis, and the more I looked the worse it got.

All of this and more is bumbling around my brain - and it is two yrs since mum died, five since dad died and mum basically gave up on life, six since I the miscarriages.

I am a mess, I am still on a crutch... but it is much better than it was... I like to earn medals - you know those race at your own pace type thingies and after mum died I did a Golden Heart challenge with Medal Mad inscribed for her. Then last yr I did the Fogetmeknot medal to remember dad - he always thought he'd be forgotten... ironically or the universe joking with me... I forgot to get the inscription done - Alaric says we can take it and have his name added to it at a shop in Gloucester. I also dragged the family into memorial walks for diabetes, cancer and dementia charities.

This year I have chose Get Lippy 60k in May from the Eve Appeal which is a charity that deals with gynea cancers of which there are five main ones. Womb cancer is of course one of them.

Walking is hard for me and oftentimes painful but there will be dedicated walks for this with live streaming from the me only ones and I am resurrecting my walking group but under the new name Wandering Stars who I plan to walk with on Friday's. I am happy to go visiting country parks and things with people too or do the odd evening if peeps want to join me.

You can of course sponsor me and help raise money for the charity - here is my just giving page:

https://www.justgiving.com/page/sarah-snell-pym-get-lippy--eve-appeal?utm_medium=fundraising&utm_content=page%2Fsarah-snell-pym-get-lippy--eve-appeal&utm_source=copyLink&utm_campaign=pfp-share